This page is always under construction. the more information and useful links I can find to help others, the more I will add. I would strongly recommend calling ARC (website detailed below under useful links) who were a great source of knowledge and reassurance for me after first diagnosis.


Anencephaly side.jpg

Anencephaly is the most severe of a group of conditions known as Neural Tube Defects (NTDs). It happens in about 1 in 2,000 pregnancies in the UK, and occurs when an unborn baby’s brain doesn’t form properly in the womb.

It is a cephalic disorder that results from a neural tube defect that occurs when the rostral (head) end of the neural tube fails to close, usually between the 23rd and 26th day following conception. Strictly speaking, the Greek term translates as “no in-head” (that is, totally lacking the inside part of the head, i.e. the brain), but it is accepted that children born with this disorder usually only lack a telencephalon, the largest part of the brain consisting mainly of the cerebral hemispheres, including the neocortex, which is responsible for cognition. The remaining structure is usually covered only by a thin layer of membrane— skin, bone, meninges, etc. are all lacking.

Sadly this condition is fatal. Most babies that are diagnosed with this condition will be born prematurely, and will die before, during or very soon after birth. Some babies may live for a few minutes or even a few hours, and very rarely for a few days.

What causes anencephaly?

At the moment, we don’t have all the answers to this. We know there are many factors which increase the chances of a baby having anencephaly, such as genetics, diabetes or low levels of folate/B12. Other possibilities are being researched. Unfortunately, this means that it isn’t possible to know exactly why it might have happened in this pregnancy.

How is it diagnosed?

It is possible to diagnose anencephaly by ultrasound scan at the dating scan.

Is there any treatment?

Unfortunately there is no treatment for anencephaly.

Will my baby be in pain?

No. Because your baby’s brain doesn’t develop, there will be no awareness of anything that happens, although there may occasionally be some reflex responses.

Source: Wikipedia and

Useful links:



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